Tuesday, September 23, 2008

This week, as I am buried in essay drafts and other deadlines, I can’t help but think of the little speech I gave my students about the drafting and revising process.

“You’re not expected to simply revise typos and neaten up sentence structure,” I told them. “I want you to be willing to re-vision your papers and the content of your argument.”

Re-vision, not revise.

Build on possibilities, not problems.

Every September I latch on to the idea of a fresh start, the same desire for a new beginning (“this year will finally be my year”) that has escaped me since childhood. Usually, I’m so focused on the prospect of a calamity-free year that by the beginning of August I am ready for fall.

This year, a summer filled with the usual infection-y mess and an assortment of unusual new medical issues left me burnt out with appointments and tests, sick of spending money on chronic health issues, and physically and emotionally drained by August’s end—just when I should be refreshed and energized for a new academic year.

So that’s how I started the semester, apprehensive and longing for the summer that wasn’t, and supremely doubtful a clean September slate was in my future.

I can’t change (or revise, as it were) the blur of symptoms that was most of my summer, nor can I make the answers that explain the symptoms come any easier, but I can re-vision my situation.

And that’s what I’ve started doing. I am less concerned with immediate answers than I am with accomplishing necessary tasks for each day. I’m enjoying a new schedule and a new routine and even though I’m juggling several different projects, I am happier when in constant motion. I’m prioritizing my many doctor appointments so the most essential ones get my time and energy (and, more importantly, don’t draw out my resentment). I’m open to the idea of a fresh start, but I’m realizing I don’t need one to keep moving forward.

But this September, I’m not just thinking about doctor-patient dynamics or diversifying our whole foods repertoire. I’m talking about something more fundamental: re-visioning the possibility of, well, possibilities.

Tuesday, September 16, 2008

So ever since my post for Invisible Illness Week last week, I’ve been thinking a lot about words. Not just any words, but the words involved in the naming, labeling, understanding, and defining of the patient experience:

Illness. Disease. Condition.

When I was first diagnosed with PCD a few years ago, in some ways my world was now divided into a “before” and “after”—for someone who has been sick since birth, this was certainly a novelty. The disease name took all my symptoms, surgeries, and various other complications and wrapped them up into a neat package. As I wrote in Life Disrupted, for the first time, my disease label actually reflected my experiences.

This didn’t mean my physical symptoms were any different after I had a label for them, but they made more sense. I know for patients who have struggled with diagnosis for years, finally having a name for their symptoms can be incredibly validating. It also confers membership in a community of patients with the same symptoms and struggles, which, given the isolating nature of some chronic illnesses, is important.

My new label also meant a huge difference in my quality of life and treatments. After all, if you know what it wrong, you can then learn what you can do to help treat it and perhaps even prevent progression.

It’s not a conscious decision, but I’ve never used the term “chronic disease” when speaking about health situations. I’ve always said I have chronic illnesses. Again, this was never a deliberate choice of words, but in David B Morris’s >Illness and Culture in the Postmodern Age, the author makes a distinction I’ve found really interesting, and related to this: disease is the stuff of doctors, researchers, and objective data and test results, while illness reflects the subjective experience of the patient who lives with symptoms.

This distinction also makes a lot of sense to me. While I think of PCD as a disease, something with a specified symptoms and diagnostic criteria, I think of my experience with PDC (and bronchiectasis, etc) as something entirely different. The disease is a definition or explanation, something removed from my identity as many things, one of which happens to include the word “patient.”

On the one hand, I think this use of the term “illness” can be productive, because it introduces the person into the scientific classification of symptoms, and it inevitably factors in the many aspects our lives impacted by our health—family roles, employment roles, etc. But I know there are patients who consciously choose to say they have a “chronic condition” over the term “chronic illness,” and I find that equally interesting. Is it because “illness” conveys something weak or something permanent, while the more neutral term “condition” connotes something temporary and just that, neutral?

And of course, if we’re going to parse out the semantic of illness and disease further, there’s the word “chronic” itself. As researchers and patients alike have pointed out, there certainly aren’t a lot of positive implications associated with the word “chronic.” Think about it—people don’t say they’re chronically happy, or chronically hopeful, or chronically joyful. They just areBut you do hear things like “chronically depressed” or “chronically unemployed,” etc.

But taken at its fundamental definition, the word “chronic” absolutely fits in with living with things that are treatable, not curable. They will always be there, but some periods they will flare or be more pronounced. In my case, there will never be a day I don’t have PCD (or any of my other problems) but that doesn’t mean they’re pronounced or problematic all of the time. It’s the intermittent nature that makes the term applicable. (Granted, progressive diseases mean that ratio of pronounced versus negligible changes, but still.)

Anyway, what I’m interested the most in all of this are your thoughts. Do you use disease, illness, and condition interchangeably, or do you have a preference? If so, why?

Wednesday, September 10, 2008

Just a quick reminder that as part of Invisible Illness Week I will be holding a virtual conference on Blog Talk Radio on Friday, September 12 at 3pm Pacific time. The topic is "Friendship, Dating and Marriage: Can You Keep It All Together When You're Young and Chronically Ill?"

Directions for how to listen to the presentation online and how to call in and ask questions can be found right here. I hope many of you will call in and make this conversation more dynamic!!

Lastly, because I can't just leave you without any good reading material, check out this Boston Globe article on a new study that shows numbers dwindling for primary care doctors. One of the major reasons cited? The strain of chronic disease patients.

Tuesday, September 09, 2008

I’m happy to participate in Invisible Illness Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)

After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.

Though the absence of outward physical manifestation of illness in no way negates the existence of illness, the world doesn’t always work like that, and that’s where the stories so universal to the invisible illness experience originate: the stares and comments when a “healthy-looking” person uses a handicapped placard; the judgments and whispers in stores or other public places when people do not move as quickly or efficiently as they look like they should be able to; the insinuations patients are lazy or malingering because they are not cured and “don’t look sick.”

This is the part of invisible illness that is challenging, these preconceived benchmarks of what healthy and sick look like that are impossible to meet, these public expectations that are harder to reach when many physical complications stand in the way. I know I’ve felt uncomfortable when I’ve had to walk slowly because of adrenal fatigue or when I’ve had to take the elevator up one floor when I’ve had a respiratory infection and haven’t been able to move enough air to climb stairs. I don’t want people to think I am simply out of shape, or too lazy to walk up a flight of stairs.

(And yet I assume they are noticing or caring, so really, whose problem is it?)

I wish it didn’t matter so much what the average stranger, however misguided or misinformed or plain old misanthropic, thinks or assumes, but it does. Who wants to be judged, criticized, or somehow invalidated?

But there’s more this invisible illness phenomenon, something I touched on in last year’s post on Seeing the Scope of Invisible Illness--the cloak of invisibility has its benefits. It gives us a space to identify ourselves as something other than patients, a space where we don’t have to discuss, defend, or define conditions. We can be just like everyone else, if even for a brief spell. We can keep our problems and complications private.

I guess the timing of this post on invisible illness is particularly compelling for me because I’m caught in between the seen and unseen. I’m temporarily wearing monitors and devices that are very much visible, that lay bare to everyone around me what’s going on inside of me whether I like it or not—and it’s a definite “not.”

(And yet I am assuming they are noticing or caring, so really, whose problem is it?)

It’s the same feeling I’ve had when being wheeled onto an ambulance in front of a college dorm or being pushed through an airport in a wheelchair. Feeling that vulnerable and exposed is, in my experience, just as uncomfortable as feeling criticized or judged for not “looking” sick enough.

So in the end, parsing out the implications of invisible illness leads me to another, equally powerful word:

Understanding.

It’s what we need from others when our reality doesn’t match their assumptions, and it’s what we need to remember to extend even when in short supply because, as we know too well, you never know the truth of someone’s situation from a sidelong glance.

Saturday, September 06, 2008

They’re not my favorite words, either. But they are not mine. While I’m often amused by the search terms that bring people to my site, the phrases that pop up the most aren’t wacky or laughable; they’re sobering:

Or some combination of the words “spouse” “illness” “sick” “want to leave” “can I leave” and “marriage.”

See what I mean? Fairly sobering…and yet not unexpected, either.

(But another combination of words comes to mind: unconditional love.)

As I wrote in an older post, it isn’t easy being the healthy one in a marriage with chronic illness, and it obviously isn’t easy being the sick one, either. I won’t repeat what I wrote in that post, but no one likes needing to be that vulnerable, and constantly being a caregiver for a spouse can be draining on so many levels.

And, as someone I interviewed in Life Disrupted pointed out, the literature out there on younger couples dealing with chronic illness is scarce. While there are many universal challenges of chronic illness and marriage, being young has its own unique ones.

Why do I mention all of this?

It’s been on my mind lately because next week is Invisible Illness Week, and nowhere are the complications of invisible illness more apparent than in personal relationships, particularly romantic ones. After all, this is the time when life is supposed to be coming together, not the time when your body feels like it's falling apart. As part of Invisible Illness Week I'm speaking at a virtual conference about friendship, dating, and marriage when you’re young and chronically ill. It’s on Friday, Sept. 12 at 3pm Pacific Time, and I hope many of you will attend!

(Because, you know, the Q&A portion will be a lot more interesting if there are questions!)

I'll also be blogging for Invisible Illness Week this coming week, so stay tuned.

Monday, September 01, 2008

Welcome to this week’s Grand Rounds. As I revised syllabi and edited assignments for the upcoming semester, I couldn’t help but think that an Education theme was appropriate for a post-Labor Day edition. Whether you’re heading back to a classroom, an office, or a hospital today, hopefully this selection of posts will resonate with you.

(An asterisk* denotes posts that are especially well-written, especially in line with the theme, or both. Consider them at the head of the class.)

I. I’m overly interested in language, writing, and semantics, so I was excited to read this first group of posts, Language: Learning What’s in a Word:

*To ask, or to pimp? Doc Gurley exposes the truth about pimping medical students, a particularly pervasive (and destructive) form of “teaching” in medical education that can have a lasting impact on doctor-patient relationships - sometimes without either party realizing it. Commit her definition to memory—while there won’t be a quiz, you just may need it sometime.

Doctors spend a large portion of their training figuring out what to call themselves. But as Signout learned from a family who calls their favorite doctor by his first name, the title that comes with medical education isn’t as important as the education itself.

David Williams at Health Business Blog knows good writing (and reporting) when he sees it. Read his critique of a recent Wall Street Journal article on stents.

II. A lot of what we learn comes from on-the-job-experience, as we see in this next group of posts, Patient Education: Insights from the Inside Track:

Reasonably Well enrolled in the “school of whatever works” to find strategies and some measure of success in dealing with chronic illness. Struggling to adjust to life with illness? This school has an open enrollment policy, people.

III. In this next grouping, Medical Education: Learning from the Experts, we learn a lot about physical and emotional health, and we also see that in many situations with doctors and patients, learning and teaching extend both ways:

*How do you know if medical school is the right choice? In another great submission this week, Signout ponders this question, and offers valuable insights for all of us wondering what we’re doing, and why. (This blog wins the overachiever award for the week!)

With Hurricane Gustav leaving a weary Gulf Coast behind it, there’s no more pressing time to look at lessons learned from the debacle of Hurricane Katrina. EverythingHealth offers insights from the front line.

Dean Moyer of The Back Pain Blog shares a post entitled Neck Pain Goes Back to Class. In it, he reviews the latest news coming out of University College London where researchers have discovered proof that heat blocks pain on the molecular level.

IV. Education doesn’t exist in the vacuum of a classroom, hospital, or doctor’s office, as we see in this last grouping of posts, The School of Life: Musings and Miscellany:

Jazzing up your lectures: As any student can attest to, information is only as good as the presentation that delivers it. Not Totally Rad uses tips from jazz legends to explore how to give more effective talks.

A lot has been written about the supposed “math gap” between males and females. But is there more to it? At Neuroanthropology, another take on what some pundits have called “fundamental differences” is proposed: differences in stress responses.